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Study: Reaching Out to a Grandchild with a Disability

 

Grandparents experience an emotional roller coaster when a grandchild is born with a disability. According to a recent study, they see their primary role as supporting their own child and the family.

Sandra Woodbridge of Queensland University of Technology and colleagues interviewed 22 grandparents of children under 17 years of age with a range of mild to severe intellectual, sensory and physical disabilities.

Participants ranged in age from 55 to 75 years of age and lived in Brisbane, Australia. Most were retirees, and all had at least two other grandchildren without a disability. A large number of the grandparents had significant prior experience working with children with disabilities as nurses, teachers and support workers.

The findings appeared in the Journal of Aging Studies (December 2011).

Supporting the family

Researchers found grandparents took on a range of practical chores in the family such as small errands, babysitting, taking grandchildren on vacation and paying for books and specialist medical assistance.

Some took their grandchildren to doctors’ appointments: "I think they were working, so we had to take [her] to the neurologists and the ear, nose and throat specialists," a grandparent of a child with Rhetts syndrome explained.

One participant talked about supporting her daughter whose 5-year-old son had severe spina bifida: "I think, you know, that it is important for her to still have a life, to not feel trapped by the child’s situation."

Others stressed the importance of helping their grandchildren connect with the wider family and community.

We have taken them to different areas, you know, to widen their feel of the country and the people and their relatives and introduce them to aunts and uncles and cousins. . . . the cousins parents don’t always want him, but we take him whether they want him or not.

Finally, grandparents expressed enormous pride in how their child and the family was coping with a challenging situation.

Relationship with grandchildren

The participants worked hard to develop a close relationship with all their grandchildren. They did their best to ensure the needs of their typically-developing grandchildren were not overlooked.

"You are conscious of wanting to make sure that each one gets that little bit of special attention," one grandmother said.

The older adults described assisting their typically-developing grandchildren with homework and caring for them when their parents were pre-occupied with the needs of the child with disability.

Grandparents also mentioned the difficulty they sometimes had in following parental rules.

For example, one mother refused to allow her typically-developing children do anything without their sister (who had severe brain damage from lack of oxygen at birth). Since the grandparents could not physically care for their grandchild with a disability overnight, none of the grandchildren could come to their home for a "sleep-over."

Yes, it would be so special to take one and then another one or even the two little ones and that would make them feel special. And I can’t spend time with them. I have little things I would like to make with them and it just really hurts, it just really hurts. I could cry over that.

Finally, several participants reported the relationship with disabled grandchildren had changed them like this 64-year-old grandmother of two autistic grandsons:

I was inclined to be very impatient and I gradually learnt that you can’t be like that . . . really I did change my outlook and my point of view an awful lot seeing these two, how they were.

Making a vital difference

The study found that a grandchild’s disability meant the usual retirement options weren’t likely to be available for some grandparents. Gone, for example, are plans for relocation or dreams of long periods of travel.

Yet, these grandparents accepted the situation and took significant pride in their role as a key support persons because, according to them, their grandchild’s disability have forced them to re-evaluate their priorities.

Nevertheless, the study showed that fulfilling the needs of all family members, including parents, grandchildren with a disability and typically developing grandchildren was a tiring balancing act for grandparents.